Chronic headaches / migraines
 

I'm having chronic migraines. My neurologist thinks they might be caused by focal seizures.

Anybody else having problems with these, and if so, what medications are you taking?

I was on 1200 mg of neurontin / day, but have been taken off of that in favor of tegretol to control the seizures. I've been in chronic pain for the past 3-4 weeks and I really can't take it much longer.

I hear you. Thanks to a major TBI, I've had a headache that while it varies in intensity, has been with me every single minute for almost three years. I know how it wears you down. Frankly, if I didn't have a small child...

Unfortunately, my neuro thinks that there is nothing that can help this sort of headache, so that's what he gives me. :mad: Others here are getting relief from various medications like Topamax and plain old acetaminophen and I'm sure they'll be along to share their experiences. I suggested some of these meds to my neuro - and he just sneered at me. I've got to think you'll have better luck with your doc: the world can't really be big enough to accommodate two a##holes of such enormous proportions.

Like you, I'm on tegretol. How high is your dose? I ask because one of the possible side effects of that drug is HEADACHE!!!!!!

I know it's hard, but hang in there.

Right now I'm on 400mg a day, but will be jumping up to 600mg / day in a few days.

Tegretol is given by weight. If you're a big guy, 600mg isn't too out there, but it's climbing. My new dose made my druggest gasp and insist on confirming with the neuro. :eek: What's sad is when we take big doses and get little relief.

You'll have to see how you handle the 600mg. I'd keep a journal to see if your headache increases along with the dose. A common alternative to tegretol is Lyrica. It didn't work for me and the withdrawl was murder, but some people really like it.

Have you tried accupuncture for your headaches? It's generally not that effective against PCS headache, but it's worth a try. I can't remember, has a good chiro checked out your neck for contributing issues? Some of the folks here also swear by biofeedback. I'm trying to save my pennies to give that a whirl.

Hang in There!

Thanks dude, I'll give accupuncture a try. It's weird sometimes the headaches are really bad, like a typical 'headache' but most of the time it's more like 'pressure'... Like my brain is too big for my head, or my head is wrapped really tightly in a towel or something.

Just hoping I get back to normal or close to normal.. it's really wrecking my life.

Yeah, I know the "head won't fit in skull" feeling. There are times when I seriously think my head will explode. I really feel the headache at the temples and at my eyebrows, too.

With the accupuncture, they can put in needles that you can wear for three days at a time. I find it can help if they put them in to lower my stress level. If I keep my blood pressure down, the headache seems less pronounced.

What do you do to keep your blood pressure down? I've noticed if I drink a ton of coffee or do too much physical activity I get slammed with a headache.

My doctor changed my meds from Neurontin to Tegretol, after witnessing me have a focal seizure. Any experience with Teg? I've noticed little to no change, and if anything feel kinda worse (and totally out of it at times).

I was on Neurontin myself for a while and it didn't seem to do much for me except make it hard for me to think clearly. I called it morontin. I now take topamax. I didn't think that it helped that much until I stopped taking it. About 2 weeks later I was running to CVS to refill the script. I had done the lyrica and tegretol as well. For me the topamax has been the best, but everyone is different. I must say though, that nothing makes me headache free. The meds make it where I'm not laid up in the bed everyday with one so bad that I can't function.

Funny you call it Morontin, because when I was on Topamax, I called that medication "Dope-a-max". Made me feel like a zombie.

Different strokes for different folks I guess.

Hey Jay,

My blood pressure becomes as issue when I'm tense or when I exercise too hard. I use accupuncture and relaxation for the stress. (I decided against SSRIs after reading a study out of Toronto's Sunnybrooke Hospital that indicated they could actually make things worse for TBI patients).When I exercise, I have to monitor my heart rate to make sure it stays below a certain number of beats per minute - or my head explodes.

How much tegretol are you taking?

Cheers

New To Forum
 

I've been suffering from headaches, inability to concentrate or retain newly learned information, ringing in the ears, dizziness and difficulty controlling my temper since falling down an embankment at work in April of 2009. I have seen my general practitioner and a neurologist for these issues and have not found any relief. I'm frustrated and feel like I'm at the end of my rope. I was put on a small dose (300mg) of neurontin back in November and it hasn't helped, in fact it may be worsening the cognitive issues I've had. I do not want to discontinue the neurontin because I'm holding out hope that it will "kick in" and help me. I have only missed one week of work since the accident and I'm presently working my full schedule. I love my job and would feel like I'm defeated if I were to take time off. Nobody at work even has a clue as to what I'm going through. I will meet with clients and lose my train of thought, forget their name and within a few days forget half of what we discussed. I fear really messing up and losing my job because of this. I am on blood thinners for a heart condition and cannot use NSAIDS due to the high risk of stomach bleeds and neurologist wants me to avoid extra strength Tylenol because he fears liver damage and rebound headaches. Unlike others who have posted here, my symptoms are not worsened by physical activity, it is mental stress that wipes me out. Shovelling snow and general yard chores actually seem to be helpful for me. Sorry for being long winded, but I just felt a need to share this with others who may understand. I want to just take some time to heal, but fear that my employer of 14 years will find out that I'm having problems and may feel I cannot handle my position any longer. Any advice would be greatly appreciated.

Welcome to the forum, Jemahon.

I'm sorry you're a member of our brain boo boo club. We all know it's tough.

Like many of us, it seems that you're receiving pretty minimal medical care. There are other treatment options for both pain and cognition issues. I have undergone cognition therapy that, while not getting me back to my premorbid function, has improved my concentration.

Unfortunately, PCS patients rarely get care without demanding it. Consequently, it's important to understand your condition and treatment options. Some excellent sources for further reading include: the Brain Injury Association of America www.biausa.org; www.tbiguide.com and our own TBI forum here on NT http://neurotalk.psychcentral.com/forum92.html

The Brain Injury Association of America has branches all over the States. They are a great resource for information, local support groups and advocacy. If all that's too much reading, there are a number of excellent Traumatic Brain Injury (TBI) videos on You Tube. (Who knew it wasn’t just idiots surfing on cars?)

I'm not so certain that it's a good idea to try and cover up your brain injury at work. Frankly, we're never concealing it as well as we think. More importantly, thanks to the Americans with Disabilities Act, you shouldn't have to.

As a Canadian, I'm no expert on your legislation. However, it's my understanding that your employer has to make reasonable accomodations. On this score, I strongly suggest your have a neuro-psychological evaulation to see how your brain is really functioning. In addition to potentially strengthening your legal position, the testing can help target your therapy. Anyway, I suggest you repost your message on the legal issues thread and let more knowledgeable members help you through this.

It's amazing that you've been able to work non-stop since your injury. Still, you might want to consider taking time off: mental downtime can be important for maximizing healing.

Cheers

Thank you for the warm welcome Hockey.

I agree with you that my trying to get through the day without my employer knowing what is going on is not the best thing in the long run. I know at times I've gotten "that look" from co-worker's and my immediate supervisor as if they are wondering what is wrong with me.

I'm so glad I found this site. Immediately after the accident I didn't bother or feel up to researching what was happening to me because I felt that whatever was going on was to be expected for a short time. It has now been nine months and I started yesterday in advance of a neurologist visit to try and find out if what I'm experiencing is in fact normal. As sorry as I am to hear your story and the stories of others, I feel that I'm not alone in this twilight zone. Being only 46 years old I do not want to live the rest of my life like this.

Will certainly take your sound advice Hockey. BTW, I am of Canadian ancestry and my bride of 23 years was born in Quebec only to become a U.S. citizen about a decade ago.

Thanks again, I'll keep you posted if you don't mind.

Like I said brain injury patients often have to understand their condition better than the "experts" to get care.

Sadly, the injury makes that difficult as it often robs of us of initiative, energy and concentration. Heck, even a bit of reading can trigger headache. Luckily at NT, there are people you have been down this road and can help you with your medical questions.

Before I came here, I had no idea about the importance of diet or that PCS patients should take supplements and avoid alcohol. My useless neuro had never checked my hormone levels, discussed alternative treatments like neuro-feedback, mentioned cognitive therapies like APT or even taken my blood pressure. Hopefully your neurologist is better.

How are you doing emotionally? Some depression is almost universal. How about outburts of temper? If you're struggling, don't hesitate to seek help from a competent professional with experience working with the brain injured.

Don't lose hope. You are only (I know it feels like a lifetime) nine months in and you appear to be functioning at quite a high level and to have considerable insight. Those are good signs.

Cheers

Yes, I have some depression and anxiety. The temper outbursts are scary, I'm thankful that when I have those moments I do not lash out physically, although I've said many things I've lived to later regret.

I'm not aware of the importance of diet and supplements. I haven't drank alcohol in over 21 years, so that's not an issue. The only supplement I was on was ginkgo, but stopped after I had two stents placed in my coronary artery back in July due to the fact that ginkgo increases bleeding time and I'm already on aspirin and Plavix indefinitely.

What are the "hormone levels" that are tested?

My long term memory is excellent, immediate memory is fair and short term memory is lousy. I just cannot retain new information. Things that happened a day before seem like a drunken binge. I can recall the day happening, but the memories are fragmented to completely absent.

Thanks again!

Your memory sounds much like mine. I know what I knew, but new stuff - forget it (no pun intended).

My temper outbursts always feel like out of body experiences. They leave me in anguish and I always swear I'll never do it again - and then I do. I just can't seem to help it. A psychologist helped me identify my triggers (interuptions, excessive stimulation, etc...). This means I can sometimes remove myself from a bad situation before I explode.

Like you, I also have trouble sensoring what I say. (My husband is a saint.) To cope with this, I conduct formal contacts in writing instead of orally. Talking is hard, as I'm seldom aware of what I said.

Hopefully, Mark in Idaho will see this thread and chime in. He's an excellent resource when it comes to supplements, hormones, etc... You could always PM him and introduce yourself.

Cheers

Jemahon,

I'm so glad you found this forum, but I'm so sorry that you have to be here. I'm amazed that you have kept your job for so long, and been able to do the work. I worked a few days after my first concussion, and had to leave the building vomiting and spinning. I don't even really remember being there for half the day.

I haven't been able to return to work, and it's been a little over 7 months for me. I recieved disability through my employer, and now am in the process of applying for social security disability. It's grueling, and I feel weird about the whole thing, but hopefully it will come through soon.

I was a very active, nonstop girl in my life before my concussion. It was very difficult for me to accept this and slow down to where I am today. I know it's a struggle to just get through the day at home, I can't imagine what you go through every day.

Keep logged in here, you will get a whole lot of information. I'll be praying for you!

Hi Kate,

Thank you for the prayers, I wouldn't have made it this long without God's help.

My saving grace is that I have fair immediate memory. But short term is poor. Now not to sound like I'm bragging, but prior to the concussion I had an exceptional memory and enjoyed the fact that I could meet a client and six months or more later be able to recognize and remember their names and the circumstance that brought them in to see me. I think that is what allows my damaged brain to get me through each work day, but it leaves me exhausted. As a matter of fact I just woke up from a power nap lol. Something I never did before the mtbi.

What I believe is happening to me now is that the longer out I go from the date of injury, the more I need to depend on memories of things that happened after the accident. For the past nine months I been mostly dealing with issues that were already well established in my mind BEFORE the head injury. Now I find myself overwhelmed trying to work on new issues that come across my desk. I could tough out the headaches and all of the other problems that only made working very uncomfortable, now work is becoming impossible! I cannot remember important details even with written notes. Recently my two sons got new cell phones and I cannot remember their number no matter how hard I try. Driving scares me because I'll find myself suddenly not knowing where I'm at and why I'm going there, it's as if I'm daydreaming without realizing it. I've had to pull over feeling a bit panicky and allow my brain to function again. Then I am able to regain where and why I'm going somewhere. Much too strange to explain.

Sorry to be rambling...I just write what I'm thinking of the top of my head. When I reread my writing I realize it's rambling, but I'm too tired and mentally exhausted to edit it.

Have a great day!

Jemahon,

I'm glad you give glory to God. I have become much closer and much further away from Him at times during all of this. Right now, I'm in a closer time- which is great!

I also, had a great memory before all this. I worked in dental offices, and would be able to have conversations about patients long after I had seen them. I could remember their first and last names and many other details about them. It's crazy to have forgotten all of that. I'm glad you have a good immediate memory, but it's frustrating to have a poor short term memory.

I've tried to find ways to cope with this myself. My husband has helped me make a spreadsheet in Excel to track my symptoms. I usually forget to keep track of them, but he put an icon on my desktop and all I have to do is "x" what I had that day. He also leaves sticky notes around the house of what I can do that day.

I email myself a to do list every day, and I keep a notepad next to my bed. I write things down as soon as I remember them, or first learn them. If I don't, it'll be gone. I never used to have to write anything down. I had a super memory! I could go grocery shopping without a list, but know everything I needed for the week.

I don't drive for a number of reasons. I too would space out a little when I tried to drive. It scared me so much. Also, the concentration would kill my head. I would feel exhausted after I had gotten somewhere. I was worried that I would be too wiped out to make it back. I was worried that I would hurt myself, my kids, or anyone else on the road. I know how you feel. It's a difficult decision to stop driving, and yes- I feel trapped a lot of the time, but I feel like I made the right choice.

Don't worry about rambling. It's good to get it all out here. Feel free to vent and ramble in a safe place that people understand!

Try to get organized in ways that can help with your failing memory. If you set things up to make your life easier, it might help. It takes more time to get things done, but at least they'll get done.

Do you have any help? Family? good friends? I hope you have a support system you can rely on and people that can help you.

Hi Jemahon,

That driving thing sounds rather familiar, too. Does it happen to you in other situations? I mean, do you suddenly find yourself places without knowing why?

It could well just be a lapse in concentration. However, you need to mention this to your doctor as it could be a form of seizure.

In the months after I woke up, people often thought I was daydreaming or "zoned out." In fact, I was having absence seizures. I'd find myself in places with no memory of why or how. If somebody left the room when I was having an absence seizure, when I snapped back in it was like they'd vanished suddenly into thin air.:BeamUp:

Later I started to have a wierd experience where, for example, I'd be sitting at dinner with my family and it suddenly felt like they were far away. I could see, hear and understand them, but I couldn’t will myself to move or say anything. These episodes could last a good ninety seconds. At first my neuro thought this might be something that can happen to TBI patients called "depersonalization." However, in my case, these turned out to be simple partial seizures.

Anyway, the point is that you need to discuss this with your doctor. Hopefully, what you're experiencing isn't more (not that that's not bad enough) than lack of focus. However, we tbi folks are vulnerable to seizures and you need to check it out.

Good Luck

welcome
 

hi guy

there are two schools of thought on this ?

struggle on and end up worse off, the brain has the ability to destroy adjacent areas of damage, if you stress it out

or struggle on and get through, dose happen :)

I struggle on ,as you do, and ended up being dismissed ( were is it written the world is fair ) I was a project manager and of my own admission no longer fit for purpose, but its natural, to get up and give it your best huh !

THEY the uninjured will put it , in the depression or cant cut it box , because they cant understand, could you before this happend ?

this is only a decision you can make, there is also the problem of neuron scaring , which may surface later on.

please see link to an old post of mine

http://neurotalk.psychcentral.com/thread59661.html

keep us posted

Chronic migraines
 

I have had chronic migraines for years. My neurologist has me on depakote ER, it seems to help some but if I really have some of my breakthrough headaches she also has given me imitrex and midrin to take when I have a headache. Maybe ask your doctor to give you one of those to take as needed when you get a headache but I will warn you they will make you tired.

Tracy

Hi Hockey,

Nice hearing from your. I'm sorry to hear that you experience absence seizures. I hope that is not the case in my situation. I remember about ten years ago my son had a child in his class that suffered from them. The other children weren't even aware that the absence seizures were happening to their classmate. I have a history of panic disorder that had been in remission (no attacks whatsoever for over five years) before my injury, so unfortunately I'm all too familiar with the depersonalization feelings, they are horrible and I have three episodes since the injury. It was discouraging because I though the panic disorder was behind me.

I believe I've had at least two concussions prior to this one without any PCS that I noticed at least. The first one was in August of 1968 when I was five years old I was struck in the head by a car and hospitalized for concussion and in 1995, I had a wrought iron aquarium stand fall off of a pallet and it landed on the bridge of my nose shattering it in a few places and a hairline fracture to my cheek bone. I was dazed and felt odd for a couple of weeks, but nothing even nearly as bad as how I felt after my latest injury in April 2009. This one really knocked me down big time. I'm still confident that I will awaken one day and all will be normal. I'm an optimist by nature and refuse to concede to this syndrome. But I know the way I've handled it thus far didn't help matters, although my neurologist never told me to take time off to rest and I just trudged along to where I am now. I'll accept some blame, but the neuro should have advised me about resting.

Nice hearing from you again!

Hi Jemahon,

Don't beat yourself up over the panic attacks. TBI can cause anxiety and panic issues. The idea of me having a panic attack before my accident was unthinkable, but now... God, they're awful.

Again, you need to be candid with your doctors - and yourself.

Cheers

Amitriptyline
 

Hey Hockey,

You really ought to try Amitriptyline. I have found that it helps my headaches, whereas other headache pills such as non-steroidal anti-inflammatory drugs (NSAIDs) did not help.

If your neurologist doesn't want to try anything, just go to someone else. Ordinary non-specialists such as your primary care doctor can prescribe this. It doesn't have to be a neurologist. You can start at a low dose 10mg nightly and work up. I believe you can go as high as 150 mg nightly.
I take 12.5 mg nightly and it seems to help me.
It also helps you sleep and I don't think that it is adictive.
You should check it out.

CS

hockey
 

Originally Posted by Hockey
I hear you. Thanks to a major TBI, I've had a headache that while it varies in intensity, has been with me every single minute for almost three years. I know how it wears you down. Frankly, if I didn't have a small child...

Unfortunately, my neuro thinks that there is nothing that can help this sort of headache, so that's what he gives me. Others here are getting relief from various medications like Topamax and plain old acetaminophen and I'm sure they'll be along to share their experiences. I suggested some of these meds to my neuro - and he just sneered at me. I've got to think you'll have better luck with your doc: the world can't really be big enough to accommodate two a##holes of such enormous proportions.

Like you, I'm on tegretol. How high is your dose? I ask because one of the possible side effects of that drug is HEADACHE!!!!!!

I know it's hard, but hang in there.
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hi hock


I have had daily HAs for two years but thankfully they are relieved by laying down ,but very wearing I take strong pain meds if I have to, perhaps you could get referred to a specialist head ache clinic I know there is some in the states


an old friend on another site said this little pearl of wisdom

IF THE DOCTOR DISMISSES YOU !!! DISMISS THE DOCTOR !!!!

but not until you have one with ears